For those of you who know this Site, you will be aware by now that we are firm advocates of letting silence speak for all who are experiencing communication issues.
Having worked with sufferers of Dementia and Alzheimer's for a number of years now our eyes have been opened to many different levels of understanding. Some of these levels have been beautiful and so humbling, others we have been asked to intervene with a view to making the sufferer's life more at ease and at peace for all family members resulting in the frustration being transferred on to a positive note by our techniques used. Although these techniques may result in being something different for each person the basis is the same and has never failed us to date.
However, there have been the odd times where we have felt that the human race has failed on some of the individuals lives and all we have been able to do is to make the Sufferer of Dementia or Alzheimer's time with us as enjoyable and hassle free as possible. Sometimes, there have been times that we have hated leaving them but have tried hard to let family Members have a better understanding of the individuals stage of mental ability and coping mechanisms.
However, on the odd occasion familiarity can breed contempt and it can seem that each person almost fuses off each other. Sometimes just not being able to put a knife in the right place can trigger a gasket being blown, or setting the table in the wrong way, or putting a clean pan in the fridge! Repeatedly experiencing these errors almost puts a black cloud on the whole of the house to the point that for an outsider the atmosphere can be cut like a knife. At other times, it's when the door closes and we are away when the fuses blow. However, we have learnt, thanks to years of experience, that it is easy to tell if there have been fuses flying the night before as the Sufferer usually shows various signs, perhaps being overly tired, or more confused than normal, or perhaps soiling or more soiling than usual.
However, this is all, to a point, totally understandable and often is not helped due to the lack of sleep that each Member of the household may be suffering from, so where possible try and encourage all parties to catch an extra few hours sleep whenever possible or relieve the situation by interacting with the Partner, perhaps taking them out for a cup of tea to soften them to the new stages of the Dementia/Alzheimer's. But be sympathetic to both. If you are at all concerned about what might be going on behind closed doors then please contact the appropriate people, perhaps the Sufferer's G.P or the Social Work department or your local Dementia Group for advice.
It is also essential that each person is given a break, and that where possible, each person in the household gets away from the home on a daily basis or at the very least every other day.
We have known situations where one of the 'non suffering' partners have been of a 'controlling nature' almost living a separate life from the sufferer, getting up at different times of the day, eating breakfast at a different time of the day, waking up and going back to bed at different times of the day, rarely interacting at all, infact almost so focused on their own needs that the sufferer of Dementia/Alzheimers is not welcomed any where within the house while they are awake. It is these situations that are not only hugely unfair but also hugely unsafe both psychologically and physically but leaves the various stages of dementia extremely difficult to cope with for not only the sufferer but also the partner (if you can call it a partnership that is).
Thankfully, in these instances we have managed to be part of an extremely caring team who dedicate a minimum of 4 plus hours a day to the Sufferer making sure that they are 'fairly understood and stimulated, with activities' suitable to them and that they have gone back ready for their nap, therefore alleviating the 'partner' from having to socialise with the sufferer! as much as leaving them has torn our hearts each time, it is something that we had to cope with and after a fairly short period of time the sufferer then realised that she/he always had someone going in on a daily basis, therefore giving them something to look forward to in the early stages but also instilling familiar voices to feel at ease with as the stages progress.
Some instances, sadly, people have set up a 'room' outside, for example, in a potting shed or an extension with known things around them where the sufferer spends her/his day, mainly so that the Partner does not get disturbed!
In these instances, when an accident happens, for example a fall or further T.I.A's rarely does the Partner either know or even want to accompany the Sufferer to hospital, perhaps out of fear of picking up a bug themselves or because of the long wait that is often experienced while the Sufferer is being admitted to hospital, or perhaps they just 'don't do' hospitals.
Let's take a moment to think what it must feel like for a Sufferer having to visit hospital on their own. As you know, we are all asked a hundred and one questions during admittance, most of these are difficult enough to answer at the best of times, but for a Sufferer of Dementia/Alzheimer's or any form of confusion, this experience can feel intimidating, threatening and extremely frightening leaving them often feeling even more confused than they were before. This kind of experience can also trigger further T.I.A's. So given this information is it indeed fair to ask any Sufferer to go on their own to a foreign environment? the answer has to be No. So, this is another stage where a good team of Carers can step in, especially if there are no immediate family around.
While on the topic of family, this experience can also be emotionally upsetting for family Members, no matter how old. It's out of the known comfort zone for not only them but for the Sufferer as well, it's instant realisation on how far along the Dementia Trail the Sufferer is, when before, being in a known environment the reality can often be masked.
Here are a few handy hints
- Always make sure you have a few Carers who totally understand the level of the Sufferer
- Always be prepared for out of the blue tears, so carry a hanky at all times
- Always carry some form of known relaxation music that the Sufferer likes, as well as one that will calm down family members and yourself
- If a hospital visit is necessary explain the level of Dementia to any Nursing Staff in the hope that the Sufferer does not have to be asked the many, many questions, as this just confirms to the Sufferer that they are not doing that well and can cause more confusion as well as potentially further T.I.A's
- Leave a diary for all who care for the Sufferer so that they can write information such as Activities participated in and on which level 1 - 3, or where you went for lunch and what the Sufferer ate
- Make sure the Sufferer drinks enough fluids and as their stages increase perhaps consider reducing foods that are more difficult to digest.
- But the most important thing of all is to try your hardest to be on the same level as the individual you are with. Each and every person has a heart, although sometimes locked it is easy to find the key to unlock that precious heart.
There are additional links within the above . .
We hope these posts will help to ease someone's life who suffers from Dementia/Alzheimer's.
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